Nighttime Subq Infusion

[Guest guest]

Sam's IgG numbers are up to a little over 1000. They were in the mid-700's last

time they were checked when he was on IVIG. Yeah! The Subq is working, and

working well. I kind of think that they should have waiting one more week to

check them, though, since they took it 3 weeks after his last IVIG. They may

have gotten a more accurate picture if they had waited a full 4 weeks.

It suddenly dawned on me last Saturday when he fell asleep during the infusion

(we had started much later than planned), " Why am I doing this when he's awake

anyway? It cuts into his daytime activities and if he's asleep he's not going

to be scared about it. " SOOO, tonight we put the EMLA on a few minutes before

bedtime (actually, about an hour later than planned, as my parents failed to get

the kids home in time, which really messed up my schedule.) I'm thinking it

will work out much better though, especially when I'm able to get the EMLA on in

time to set the catheters when he goes to bed. Then I can start it really low -

since he's nervous about whether it will sting when I increase the infusion rate

- but once he's asleep, I can jump it straight to the maximum. (Theoretically,

I could start it on the maximum rate now, since he's used it several times. But

he's scared to try because the first burst is still stinging. At least he

thinks it is. I noticed tonight with the radio on and the pillow over the pump

that he didn't notice the first burst as much. Go figure.) So my current game

plan is to start low til he's asleep, go to the maximum, then clamp the tubes

and let it set for a few minutes so that there will be a little more absorption

before pulling out the catheter. I did that last time, he didn't even wake up

when I took off the tape (he HATES that part). The next morning he said that

the bandaid just had one little spot on it. When I pulled the catheter out

right after everything is pumped in, there was more backflow. A couple of times

it saturated the bandaid. Once I even put kind of a pressure band aid over it

to keep it from leaking back out. But just leaving the catheter in for an extra

15 minutes seems to do the best. Since he's asleep anyway, it makes no

difference to him.

Anyway, as long as you don't mind staying up an hour after your child is in bed

(no big deal for me, I've been having insomnia for about 4 weeks now - maybe cuz

the kids have all been coughing so much I just can't settle down til they are

all quiet), this seems to be a good option for us and keeps the treatment from

interfering with Sam's daytime activities AT ALL.

I'm hoping that they send some of that adhesive remover with the next shipment

of supplies. I asked for some anyway. That will make it even easier to take

off the tape, regardless of whether he's asleep or not.

I'm so thankful we've been doing this. Sam's had a harder winter than usual, so

that twice a week boost has got to be helping. Of course, my non-PID girls have

been having a harder winter too. They've all had bronchitis for over a month.

My oldest daughter's blood tests came out good, except her mono test was mildly

reactive. They didn't know if she was getting over it or starting into it. I

suspect that she's getting over it. (I hope so anyway. She's just been

exhausted.) Today is the first day in 2 weeks that all three of them were in

school on the same day. Sam finally seems to be improving, but he's actually

got snot running out of his nose when he sneezes. That is just unheard of with

him. I don't think he has EVER had a snotty nose. At this point, the cough is

probably more related to the drainage from his nose than anything else. Oh

well, this too shall pass.

God bless,

Wenoka

[Guest guest]

Wenoka - we've done a few of Macey's infusions at bedtime but what we've

found is that the med absorbs into the skin better if she is up moving

around. She doesn't get as big a pocket and the pockets are not as red or

sore. When we infuse during her sleeping and go to take the needles out the

med is just sitting there in the pocket and immediately wants to rush out

the opening. In the morning she will have her bandaids changed and usually

have to change underwear because it leaked through.

Ursula Holleman

mom to (12 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

Sam didn't have any problem with leakage this time, but then, I clamped the

tubes and left them there for 30 - 40 minutes after it was done pumping to give

it a little time to absorb. He'd never put up with that if he were awake. Once

the pump beeps, he wants to " be free " . He was up and dressed before I had a

chance to check it this morning, but when I finally took the catheter out, I

didn't even see a drop of leakage. I told him to leave the bandaids there til

after school so that I could check them so see if anything came out during the

night.

He didn't complain of soreness either. Of course, sometimes I think he just

takes a certain amount of discomfort for granted and doesn't say anything about

it. I'll have to ask him about that when he gets home from school too.

Thanks for the info.

Wenoka

Re: Nighttime Subq Infusion

Wenoka - we've done a few of Macey's infusions at bedtime but what we've

found is that the med absorbs into the skin better if she is up moving

around. She doesn't get as big a pocket and the pockets are not as red or

sore. When we infuse during her sleeping and go to take the needles out the

med is just sitting there in the pocket and immediately wants to rush out

the opening. In the morning she will have her bandaids changed and usually

have to change underwear because it leaked through.

Ursula Holleman

mom to (12 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

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